Monthly Archives: April 2012

My recent trip to Montreal was life-changing for me. Not only as “Abbie’s Mom”, as “Neurotrauma Caregiver” or even “Avid Amateur Scientist” (I had expected impact in all these areas), but as Tiffany…a person who existed before Abbie, before her injury, and although very changed by these years, still a separate person who has never truly processed the events of May 2004 for herself, through her own lens.

The second two days of my visit Leonid was scheduled to just lecture the group and have discussions with us. I was expecting entirely technical and theoretical topics. I never saw the heart-rending ambush coming.

We took a short break on the first morning of lectures. Leonid returned and wrote five rectangles joined by addition signs, drew a line under them, and then repeated the five rectangles with addition signs. He was about to explain what he called “The Happiness Quotient for a Spastic Quadraparegic Child” — to me it is also the framework for redemption, freedom, mental and emotional health, and making every day a good day for families.

Here’s the diagram Leonid created:

Here’s how he explained each pair (one positive, one negative) which could be measured by whatever scale (5, 10, even 100 points ) a family would find useful. The sum of the top numbers are then divided by the sum of the bottom numbers to come up with the “Happiness Quotient”.

Physical Pain/ Pleasure: children with limited mobility don’t get to run barefoot through the grass, dash through the sand into the waves, or even enjoy a truly deep breath after a quick sprint. They are, however, often exposed to daily amounts of pain and discomfort that would make most adults whimper incessantly.

The challenge – no, actually, the opportunity for families, is to move this number up by adding physical pleasure simply. Abbie’s new jacuzzi tub came to mind. So did walks outside in the breeze, and then staying outside to let the first drops of drizzle find her cheeks. Suddenly, I wasn’t mentally panicking about how to eliminate all sources of physical pain – I was making peace with that reality, understanding I can change the equation by adding physical pleasure every single chance, every single touch, I get.

Achievement/Frustration: Leonid defined frustration as the gap between intention and outcome. Boy, is there ripe ground for that in motor-disabled children. Abbie’ s mind is so sharp, and her body is equally recalcitrant. It is only her defiant spirit urging one more try, every single day, that keeps her going.

The trap for families of neurotrauma survivors is that this is the very metric we run to, obsess about, live and die by. Although is our sunrise and sunset, our world is so stormy that we rarely get a glimpse of either one.

I think there are many appropriate nicknames for this metric: Soul Crusher, Spirit Killer, Fountainhead of Tears, just to name a few.

Why are we so desperate for measurable improvement in this area, that we drink solely from such a poison well? Why do we think that watered-down academics and/or mobility are the only way to measure success and create happiness?

Proof.

Especially for families whose loved ones survive profound neurotrauma, we had to begin proving they were “worth it” — proving they had worth — from the very start.

“Please believe me, she is worth keeping on life support”

“She’s fighting so hard – she is worthy of receiving therapy.”

“She has a brilliant mind – she is worthy of an education, no matter if you have to find alternate ways of teaching her.”

SHE HAS WORTH!!

Leonid pointed out that the social language has been pretty well sanitized — “special needs”, “Intellectually disabled”. Not so in the medical realm, where families start their journeys. Injured loved ones are freely and frequently labeled “vegetables” or ” in a vegetative state”. It is left to their shocked, grieving, dazed families to prove they retain the inherent dignity and worth of a person.

So, we run to achievement to make our case. In the end, the achievements usually gain lukewarm appreciation at best, as the focus remains on the gap between “normal” and the abilities of our loved ones. There is never enough time in the day for the amount of teaching, therapies, practice, and work needed to glide of up the scale of achievement to full “personhood” again…so families are utterly defeated, and the rare and unique gifts possessed by our injured loved ones are overlooked by a world searching for “contribution” and achievement.”

That evening, alone in my bed-and-breakfast room — no TV, radio or internet to distract me, the full force, and full weight, of the fight for proving that my sweet girl is who she has always been struck me with ferocity.

How different this journey would have been if her personhood, her worth, her “Abbie-ness” had been a given, a mutual understanding from the beginning.

Until every family is allowed that starting point, I am hoping the Happiness Quotient will give them a broader, holistic view of their child, and their life. Keeping “achievement” in perspective will be life and heart-saving for all.

Joy/Fear

This metric is completely tactile, without words. While Achievement can be verbally-assisted, this pairing hangs on touch, presence, wordless connection. An open-hearted hug, a silent clasping of the hand reach deeply into the soul.

This is nothing we don’t already know. Recall a time when you were vulnerable, ill, perhaps even in the hospital. Did someone you love touch your forehead or hold your hand? Do you remember how powerful that was, and how you wished they would never stop?

So simple, and yet we let things like wheelchairs, hospital beds, twisted bodies and achievement-focused schedules and routines get in the way of snuggling, touching, hugging..

My only comment to Leonid during this portion was, “Thank you…you have made hugs as important as therapy…”

Relaxation/Tension

“A child will never thrive and be healthy if he cannot relax, ” said Leonid. And, that about sums this pairing up. Introducing tension into one part of the body, through positioning, orthotics or demands for function, introduces tension throughout the body.

Our injured loved ones pay a high metabolic tax for this tension, and it works at odds against our many varied efforts to improve their health. This metric allows one to consider the “tension tax” as part of the equation when considering which interventions, therapies, orthotics and functional goals to pursue.

It also stimulates the creative minds of parents, in regards to increasing relaxation through physical pleasure, joy and appropriate functional demands.

Connection/Disconnection

The strongest human need is connection. Neurotrauma robs survivors of many or most channels of connection: speech, reliable eye contact, the ability to gesture easily or reach out and touch.

Health complications that can follow neurotrauma also impede the ability to be a vibrant part of the family, circle of friends, school and community. Isolation is indigenous to neurotrauma – creating meaningful, enduring connection requires purposeful, thoughtful efforts.

Of note, connection and achievement being independent variables, desired levels of achievement should not be gatekeepers for connection. We cannot wait until our loved ones can speak clearly, until they can hold their heads up endlessly (without a drop of drool), or until they can woo the world around them sufficiently to engage with them.

We can be the bridge. Often it is difficult to entice the “typical” (because no one is “normal”, right?) people to cross from their side. But, our loved ones don’t need fan clubs, they just need a few faithful friends to enlarge their world, give them genuine, respectful friendship, and see them with their hearts.

The Weight of Each Variable

Every family can decide the importance of each variable, and may choose to weight them differently. For us, the overall “Happiness” number is what matters, and anything that can move that number up has value, so we are weighting them equally.

Abbie definitely derives happiness from her academic successes, thus Achievement is not completely the Evil Terror I may have painted. However, the equation is more for me, as her mom, to holistically frame every decision in the context of “How does this contribute to Abbie’s happiness?” Not “prognosis”, or “ability” or “rating/evaluation”. Not future, NOW. Today.

Differing foci, however, is another matter. For a child in Abbie’s condition, if a family focuses on Physical Pleasure, Joy and Relaxation, then Achievement and Connection may more naturally follow as health, stamina, and comfort increase.

You can bet we will be doing school every day (Abbie insists!), but the focus of my heart, my thoughts, and my time is how to Increase PP, J and R, along with more opportunities for C. My goal is for her to be happy every day, on the way to some big goals.

I hope that my fellow neurotrauma trekkers find this as life-redefining as I have. And, if you are not a trekker, but are part of our faithful cheering section — we could really use your help! Connect. Touch. Engage. You have the power to bring enormous happiness. Today.

So many months have passed that it is difficult to know how, and at what point in time, I should begin this update.

Most importantly, Abbie is doing very, very well. The addition of a Cough Assist machine to our arsenal of support has been life (and body) changing for her. This machine provides positive and negative pressure to her lungs — in other words, it forces in a full breath, and then forces a strong exhale as well. Using this machine 2-3 times per day, 5 breaths per session has actually changed the structure of Abbie’s chest. Her ribs no longer flare at the bottom, and her chest is rounding out more.

The first couple months of 2012 were spent battling systems. I refrained from writing because I didn’t want to spew negativity or vitriol in a public, permanent place. The issues have been resolved favorably, and I am mentally in a place where I can write again with an open mind and heart.

Abbie will be starting sixth grade this summer. We had her IEP meeting at the end of March, and approached it with caution. Ray put it best went he questioned the elementary school staff, saying, “I am just trying to understand how 15 hours of tutoring — half of which was testing — can be considered a grade level’s worth of education.”

The response was that no children are retained in elementary school. Period. “So, ” countered Ray, “All that has really happened this year, for Abbie to be promoted to sixth grade, is that time has passed.”

Yep.

We were considering fighting the promotion on the basis that Abbie had not been afforded reasonable access to education, but then the team from the middle school, who attended the IEP, began speaking. It took me about 30 seconds to realize that they were fully committed to actually educating Abbie, working collaboratively with me, and finding ways to make her educational experience as effective and enjoyable as possible.

So, middle school it is! Abbie is terribly proud of herself, and enjoying having a tutor come for several hours a week instead of just one. We will be sad to lose Miss Karen, who has learned how to work with Abbie (not a simple task), and has become an advocate for her. But, we are looking forward to working with Kaimuki Middle School for the next three years.

Their team came for a home visit a couple of weeks ago, and in just that informal time, brought ideas, resources and encouragement. Abbie’s nurse Alicia caught my eye while they were visiting, and just raised her eyebrows and mouthed “Wow!!” I nodded back with a grin…we are ALL excited.

I traveled to Montreal earlier this month, at the invitation of Leonid Blyum, the inventor of ABR. The ABR clinic directors from Denmark, Singapore and Argentina also traveled to Montreal, so I was able to meet each of them (incredible people all), observe them work with families, and then receive two days of lectures from Leonid, along with training on what to do with Abbie. So much was packed into those four days that it requires a separate posting to share information, beyond ABR techniques, that will be particularly profound for families of severely physically disabled children.

There were times during that visit when I just couldn’t quite believe I’d been invited, that I was sitting there soaking in new ideas and discussing them directly with Leonid, learning from such kind and competent people. I call it a “Vortex Moment” — as in, not quite knowing what vortex I walked through to land me in the company of such a small but wonderful group. I treasured every moment.

I apologize for the lapse in updates, but look forward to sharing meaningful information, exciting news, and new paths in the coming weeks and months.